I said every month I would send a Down Syndrome fact out into the world and so it shall be. As my teeny 6 pound baby now fills out 3-6 month footed pajamas , I feel reflective. However, I also sit writing this after my first week back with inner-city 5th graders….so forgive me if my metaphors and onomatopoeias aren’t on point.
In honor of Judah’s 4 month birthday I thought I’d talk about the 4 chambers of the heart. Now wouldn’t that be cool if every month lined up perfectly with a symbolic number? A girl can dream… but for now I’m just taking it one month at a time (although, secretly I am brain jotting ideas for month 5.) So, in babies with Down Syndrome, there is a 40-60% chance that a hole can exist in either the top two chambers or the bottom two chambers of the heart. When Down Syndrome haunted my house, I didn’t even KNOW this ghost was lurking. However, after Judah was born and we were all on the same Down Syndrome page, the heart was the organ that stood in the limelight. Every time a doctor came in with a stethoscope (so every.single.time) stress cut my life line just a little bit shorter. Bobby and I leaned in, as if to read the doctor’s thoughts but too afraid to ask. The doctor would then utter “nope, I still don’t hear a murmur,” and Bobby and I could again exhale until the next time. The fact that a murmur wasn’t heard was fabulous news, but we weren’t in the clear. Only a cardiologist could tell for sure. So the appointment was made for February 23rd, approximately 3 months from the day he was born. Might as well been 3 trillion millenniums but what can you do? I really shouldn’t complain because the thing about Down Syndrome is this: once the diagnosis is made or there’s even a chance, then services are offered to you like drinks at a party. You don’t even have to think about it. How does everyone know that you couldn’t bear to think about it? So, the cardiologist appointment is made and you wait………..unless your child gets RSV.
At a mere 20 days old and one day after Judah’s original due date, we were admitted to the hospital. It was a scary time with a blue, cold, premature, baby and my very first ambulance ride. When Bobby arrived at the hospital we were faced with another grown up challenge, filled with adult decisions, about little people’s lives….Whoa, weren’t we just picking out our plate pattern? We made the decision to split up. Calvin had just had his world rocked when his brother was born and he was deserted at his grandparents with no warning. Recovery was slow and tantrums were prevalent. We decided one grown up would stay at home with Calvin as an attempt to return life to some version of normalcy. The other hovered and hand held over the baby we had just met. We alternated the twelve nights and as the fate fairies would have it, I dealt with all the debacles. I can hear those funny fairies discussing now…”Which parent should watch the baby get hooked up to oxygen and rushed in an ambulance?” “We should let mom do it, she’s never been in an ambulance.” “Oh, excellent idea.” “How about, who should be with the baby as he’s rushed to the PICU and stops breathing on the way?” “Let’s give that one to mom too. She gets real anxious in these kind of situations, maybe this will make her stronger.” How about when we have the cardiologist come to the hospital, do an ultrasound and tell her if her son has holes in his heart?” “Mom would love that one, you know how she loves a good anticipation situation.” So…….it was me. When the ultrasound technician came in and took what seems like thousands of pictures of Judah’s heart, it was me. I watched. My brain scanned everything I had ever learned in Health class as I tried to decipher the black and white blobs. Then, after all her silent scrutinizing was done she told me to wait for the doctor. I was never so torn to see a doctor in my life. I wanted to know. After all, originally we weren’t supposed to meet this destination for another 2 months. But I didn’t want to know. I was again alone and wasn’t sure I could take much more trauma. As luck would have it, I had reached my trauma limit. The young, friendly, doctor drew me a diagram (which I saved by the way) explaining where holes could be but weren’t. I could’ve kissed him. I’m pretty sure I hugged him. We kept our appointment for February and he breezed out with a suitcase full of my worries. When Judah was well we went back to the pediatrician who sent us in the ambulance. He felt he needed to share. He told me that if Judah did have those holes in his heart he would not have lived that day. I wanted to hug Judah so tight and punch the doctor so hard all in one instant.
February rolled around and my heart was healed and singing. Now it was time to check on Judah’s. I bundled and packed up my boys for the great cardiologist odyssey. Calvin was holding it together by a thread as per his usual behavior in an official setting. I thought this visit was a formality and assumed it would be a quick one. Sticky circles were placed all over my baby boy’s body. Even Calvin could see through the trickery of the cute little bears on them. He wanted them OFF of his baby brother. Some medical recording happened and the lady left the room. She told me the doctor would be right in. Then, in walked the ultrasound technician from the hospital. I recognized her and my heart sank to my socks. Why was she here? I think I asked her just that and in a nasty, accusatory tone. She told me the doctor just wanted to make sure. So off we went, down the hall, me dragging Calvin, Judah at peace in his car seat. The whole time idle chat was being made, Calvin was engrossed in a cartoon, Judah was mesmerized by colorful lights and I was panicking. I have grown to not like doctors very much these days. Before Judah, I most literally, trusted them with my life. Now, I wouldn’t trust them to deliver a piece of my mail. So, I laughed at the tech’s jokes and deliberated how I should handle myself now that my son did in fact have a heart defect. One long story and intrusive battle later, the doctor arrived. He asked me a bunch of questions about Judah’s eating. With each question my own heart grew more and more damaged. Then……..”well, his heart looks fine. The PFO that every baby is born with closed right up and I don’t ever have to see Judah again if that’s what you would like.” Immediately, tears stung and splashed from my eyes. Poor Calvin had seen this too often in recent days and gave me a frightened face. I hugged him tight and told him Judah’s heart was okay. I left with promise, a text to everyone I knew from the parking lot and a WTF as to why I was put through so much torture to get here?
Now days, this memory still prickles ;but I hold on to that prickle as a reminder of how grateful I am. I will take a prickle over the impairment you must feel when your baby really does need open heart surgery. It happens too often with babies that have Down Syndrome. You see them in their miniature gowns and you think “that ‘s not right.” A baby getting ready to have a surgery that would be major for any grown adult is not easy to see. But you know what? These surgeries are successful! These babies grow to live long healthy lives…. and these mamas and these daddys? They survive it too. They hold their babies a little tighter from that day forward. They put just a little bit more faith in God. They have a little bit of a better understanding of what it means for people to be fighting their own battle and so they are a little more compassionate. They are a little bit more gracious and they are a bit more superior to the rest of us. But that’s the least they deserve don’t ya think? I think they are absolutely justified in their fast pass through the pearly gates for sure.